In India, Dispensers of Balm Travel to Death’s Door

A white van coursed through narrow roads along the monsoon-soaked coastline of Kerala, a state in southwestern India. Inside, Radha Upasarna, a volunteer, and two nurses looked over the roster of patients they would visit, most of whom had cancer or heart disease or were paraplegic.

As they bumped along through the area’s villages, the women shared snacks, stopped for roadside chai, and sang film songs in Malayalam, Kerala’s official language. Around midday the van parked outside a whitewashed home where four out of the five members of the family there were chronically or terminally ill. As they did at each home, Upasarna and the nurses quickly got to work: they checked for bedsores, filled prescriptions, delivered kits of lentils and rice, and often just listened to stories.

Bolstered by pillows on a daybed in the living room, Alikoya Karathattya, a snowy-haired 62-year-old was in high spirits, despite recovering from a recent chemotherapy treatment. Karathattya supported the family by driving a motorized rickshaw until he suffered a stroke in 2008; shortly afterward, his bladder cancer was diagnosed. His daughter Semina, a 34-year-old single mother, was receiving chemotherapy for cancer of the cheek, and his wife, Ayshabhi, was trying to control her diabetes, a widespread problem in Kerala.

Upasarna, a tiny woman wrapped in a cotton sari, sat at Karathattya’s bedside, holding his hand and assessing his pain. Working with a nonprofit in the Ernakulum district called Apium, she is one of 15,000 volunteers in Kerala who assist a network of physicians and nurses in extending palliative care to tens of thousands of people who are incurably ill, bedridden or nearing the end of their lives. Upasarna said this work was not only a service to her community, but a way to overcome the loneliness she experienced after her husband died last year.

“It doesn’t feel like work,” she said. “It’s just something I want to do.”

Volunteers like Upasarna are the linchpin in Kerala’s palliative care system — one that was singled out as “a beacon of hope” in The Economist’s “Quality of Death” study in 2010. Kerala’s achievement is especially significant at a time when richer Indian states and wealthy countries like the United States are struggling with the same challenge: How can health systems offer the possibility of a dignified death to everyone?

Most people want to die the same way — pain-free and at home, surrounded by family. But in reality, most people in high-income countries die in a hospital, while in many lower-income countries they suffer in pain without medicine or facilities.

Countries take different approaches to their chronically or terminally ill. In Britain, ranked highest this year in The Economist’s “Quality of Death Index,” the government has invested $703 million on palliative care. In the United States, starting this year under the Affordable Care Act, doctors will be paid for time spent in conversations with patients about end-of-life care. And in Uganda, the health system has invested in nurses, instead of doctors, for pain management and hospice care.

“It’s the universal experience,” said Ellen Goodman, co-founder of The Conversation Project, an organization that guides people to talk about end-of-life decisions and pain management (pdf). “When you get this right, you get something big right.”